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May 14, 2013 / paperkids

How it is

20130514-153648.jpg  Sometimes it’s hard to describe life when someone asks “how are things?” because things are always changing.  And change is always good I think, even when it’s hard.

It took a while before that desire subsided, the instinct to dash to the computer and furiously pound out Emma’s words to anyone who wanted to read them.  Oh, I still keep all her words.  Lately they are coming slower and sometimes not at all.  She goes through phases.  They might come one word at a time over the course of a day. But other times they seem to flow so easily that I’m almost convinced she’s holding back on me. Still at other times, her sentences drift off to leave me wondering what she was going….

What was it she wanted to say? I guess I’ll never know. Some sentences never get any closure. At times it takes her so long to answer questions that everyone might be three conversations ahead of her. Maybe it wasn’t all that important to her I tell myself. I hope anyway.

The world moves fast these days.

I find that asking her simple questions is sometimes the hardest task for her. She’ll type a letter and then hit backspace and it might go on like that for a while.

Me: How was your day at school today?

Emma: usually I yearn…really ….

or it might look like this:

grrseeaxtc w was si]==o desdetdrted zt recesatloo hor=t

Me: Ok Emma you have to sit up like this” I correct my own posture. “C’mon let’s concentrate, okay? You can do this.” She models me for a moment, arching her back and leaning forward. My hand rests on her shoulder giving her a little pressure or sometimes her elbow, giving her hand light or hard squeezes in between letters as if to “reset” it. She might type out one letter and just get up and float around the room. It really all depends on how she is in the moment. And I know this may all seem so scattered and inconsistent, but hey…

That’s just how it is.

20130514-154221.jpgOnce or twice a month she’ll wake up and I know it. It’s going to be a rough day. I see that far off look in her eye. I know that she’s on edge and any small thing could set her off like a dead ipad, or an awkward transition off the couch, or sometimes it seems nothing at all. I’ll hear her screech and pound her head into the couch arm. During these times, I try to find new and creative ways to deal with these episodes and I get almost protective over her as if to say, “I’ve got it. Just leave us alone… we’re okay.” I brace myself to handle anything and rise above the nerves. Sometimes Jared and I switch off to whoever has the most patience in the moment. I watch her writhe and kick and I have to position my body over her to secure her from breaking things and keep people from getting hurt, including her, until it passes. These moments are maddening for us all as we just try to get through it.  I tell her to breathe. I tell her “it’s ok. It’s just one of those days, Emma.” I lay my hands on her and pray both silent and out loud and sometimes angrily. I give her anxiety relieving meds. I put my hands all over her and say  “peace…peace….peace.”

I tell her that this will pass.

It might take two days for the periodic meltdowns to subside. We rest in tears and sweat after and I know that we are okay for now.  Our limbs are jumbled up and intertwined on the bed and I can’t help but feel a sense of optimism and euphoria that this storm has passed and we handled it the best we could. We enjoy the moments of peace as they come to us.

This is how it is.

I have read enough to know that Emma is not alone in these times and that many other kids and adults with autism struggle with these kinds of behaviors and especially in adolescence.  Yet lately Emma is changing. Those times are getting easier somehow. I see something new in her eye. I look over and she’s staring at me in her deep silent way, her large blue eyes breaking me away from any worldly thought. She reminds me of what is important. She reminds me to slow down and appreciate life.  I pray better.  I believe more.

Despite how hard things are for her, she often wears a confident smile and those eyes shelter some kind of wonderful secret that she doesn’t feel the need to share. Certainly not like I do. And lately she has begun imitating me in a whole new way! I find her walking right behind me. I might look over to find her watching me closely, moving her hands and head to imitate mine.  She stares at my and Jared’s mouth and we work on trying to say letters.  When I pray at bedtime she begins to softly mumble, her words flowing underneath mine and I imagine she’s working on saying every word, so I slow down. “Thaaannnnkkkyouuuu forrrr thissss dayyyyy”.

She has the “amen” down.

20130514-153527.jpg

Yes, she’s working so hard. She seems more determined than ever at certain things. I’m backing off more. I’m having her do things that might give her some independence. She can make her own oatmeal with a little help and no longer has such a hard time with transitions like she used to. She loves to dance around the living room with me and smiles when her brother steals her ipad. I am having her wash her face but sometimes she gets confused and might rub a cloth full of soap in her eyes. This self help business is a long process. I watch her struggle with a body that won’t cooperate with her thoughts no matter how much she wants it to. I sometimes see people stare at her or say “she doesn’t understand” and want to scream…

“She’s really smart you guys, but she just can’t stop her body from doing that!!! OKAY??!!!!! She’s just like you…she hears everything you’re saying, do you understand??”

But of course, I don’t always speak up unless there’s an opportunity. Would my words change anybody’s perceptions? I hope and pray.

This is a journey of ups and downs for sure, but the storms are always – will always be – temporary. It’s during those times that we realize our strength and where it comes from. It’s in those times that we have to let go and trust God. Soon the sun comes out and shines on all of us, lighting the path again.

And again we go forward, but never alone.

Here is Emma’s latest poem. She typed it out in a steadfast, easy manner, although it took her a few days. She may have a hard time with small talk, but her poetry says more than most could. What a blessing and gift she is!!!

Using gods unruly teaching

Teach me

I yearn for  the

outside of yesterday

you gesture to me

to assemble

a weary two days

where using your

quieting accolades

of ways typical to you

they rise up

year after year

printing love, rest

and peace

across the universe.

– Emma M. 201220130514-153619.jpg

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12 Comments

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  1. Janelle / May 15 2013 12:31 am

    Thank you so much for sharing your journey so much of which is similar to ours with our son. Your words give language to what I feel as I love him & honour him on his unique path. Thank you for encouraging me along the way. Emma, you are an amazing young lady. I’m so inspired by your strength. God bless you all xo

    • paperkids / May 15 2013 12:51 am

      Thank you so much for sharing that Janelle! Your words encourage me and I just love connecting with other families who share a similar story. God bless you all too!

  2. moysl / May 15 2013 12:41 am

    So beautifully written about that unique journey you both are on. And I’m always enthralled with your poetry, Emma!

  3. glo / May 15 2013 1:31 am

    What a beautiful description of this part of your life. I am moved to tears by your willingness and ability to reveal to others your heart and soul. The soft underbelly exposed, vulnerable, is displayed so that, despite the personal cost, others can be inspired.
    You are sharing hope.
    Thank you

    • paperkids / May 15 2013 1:47 am

      Gloria, Thank you so much for your comment and always being there for us. You continue to inspire me and give me hope. Love you.

  4. shegoestowatermom / May 15 2013 2:01 am

    This is beautiful and poignant, Sabra
    Love always to you all
    Mom 2

  5. shegoestowatermom / May 15 2013 2:30 am

    Here is the poem I wrote after visiting you last time: I wrote it with love and admiration in my heart:

    My granddaughter tries her voice.

    She tries in low rasping ranges.

    She sings.

    When she can look at you,

    She uses one soft word:

    Yes. No. Blue.

    She tries out phrases:

    We are running.

    When she tries these phrases (sitting across from me on the sofa)

    I tell her

    I like the sound of your voice.

    When she is silent,

    Or looking up and to her left,

    I tell her

    You are surrounded by love.

    And she smiles.

    People dream about her speaking. She captures our imagination, this dear red-headed, curly – haired, blue-eyed angel.

    When she is afraid,

    Her body speaks in deep bending and grasping and clutching and squeezing. She screams.

    When she breaks out in fear,

    Her parents, my son and his wife, hold her tightly and tell her they love her.

    It takes strength, strength they didn’t know they had.

    We will never know a reason. What if is not an option.

    Through confusion, disappointment, our strength drives up through murky water to blossom pink when we need it. – Suzanne c 2013

    • paperkids / May 15 2013 2:41 am

      Thank you for sharing this Suzanne! It just brings me to tears. I think it deserves a post of it’s own. It’s rare you see yourself from someone else’s eyes. It’s beautiful.

  6. therapistmorganhill / May 15 2013 4:19 am

    Beautiful poetry, distills everything down to what really matters most. Soul speak. Thank you Emma.

  7. Alexandria Patton / May 15 2013 9:38 am

    Sabra, that was amazing. Love your writing, openness and faith! You and Jared are so strong ad such great role models for other parents! Emma’s stories are so inspiring and can’t help but share her world and wise words with anyone that’s willing to listen. I am grateful to be apart of your families journeys.

  8. shegoestowatermom / May 17 2013 3:22 pm

    Sabra, Emma,
    I have read and re-read your thoughts and am once again full of admiration.
    For you, Sabra, and for my son Jared for the way you approach your days with your beautiful children, and for the way that you work together to rise to the challenges.
    For you, Emma, for continuing to be who you are, in spite of the times when it feels like your body owns you. Your poetry speaks to the universe!.
    And for little brother Hayden, whose cheerful sweet smile is so bright, the way he loves his parents and sister.
    Sabra, the children are grateful to you, and will continue to be as you honor yourselves, develop your strengths and find time for fun.
    The photos above show the bond between you and your daughter.
    I know it takes a lot for you to find the time to create these poignant posts, thank you so much for sharing yourselves. I have written way more than I intended so I’ll stop. Just know how much I love all of you..
    Mom2..
    ,

  9. Molly / May 18 2013 12:33 am

    Love,Love,Love

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